I know we’re well into this covid pandemic, but I can’t seem to get a straight answer.
I have a 12 year old daughter with proliferative angiopathy. Every doctor tells me something else in regards to whether she’s at increased risk for catching covid.
I don’t know what to do. She’s been home since early March, and I don’t know whether we should send her back to school or keep her home ( her school does not have an option for distant learning).
And it’s not only her. If she is at increased risk, do I keep the rest of my children home?
Some of my children are really struggling and need the social stimulation.
I’m so exhausted from thinking about this. I don’t know what to do. 
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Hello @Gayilsmom I am so sorry you even have to think about all this. I am in the USA and I see the heads of the depts at Stanford.- California My pain neurologist was happy to hear that I was being cautious and limiting my activity and contact with the public and even my family that I dont live with which is hard since we have a close Italian family and I am used to seeing my parents all the time. She herself wont get on an airplane and her dept is only seeing 8 patients a day. After we talked she bumped up her vacation that was supposed to start in August - she left 3 days after we spoke in June and drove her kids and husband to Denver Colorado which is like a two day trip which she wasnt even going to stay in a hotel she planned on driving straight thru to visit her parents for a month. My sister and both see her and my sister was trying to get an appt and got a message from her and my sister said what the hell do you say to her??? When COVID first broke out I was reading about it and it scared the crap out of me and another gf who has health issues as well. She has a two children that are around your daughters age and she has been keeping them home since January. She is not returning them even when they give an all clear. Here in the USA there are 14 strains of COVID going around. Today in fact we just had our first repeat case of a young man who is 25 and now he is really sick and in the hospital. I am also part of our local counties health updates and we are still seeing spikes, even though we still cant test everyone. I am not only concerned for my own health but my husband before he met me had a severe case of pneumonia 28 years ago and almost died. He was in the hospital for a month. He eventually went back to his normal activities and working out doing his martial arts he knew he had a scared lung but it did not bother him. About 4 years ago he started to have a cough then it got worse and then he was diagnosed with COPD which is basically chronic bronchitis- Its painful and he has to do inhalers a bunch of times a day and will eventually probably die from it. So whats my point - we dont know what the long term damage is going to be from COVD. We do know that it seems to cause blood clots - which I have had 5 in my brain prior to my avm and I went into a coma but I was ready to die I was in so much pain. So I cant imagine having blood clots and severe bronchitis… I think this year is for kids is a home year - teach her some life skills around the house- If she has her own room you could potential do it where she would eat here meals or you could properly social distance from the other kids if you are going to allow them to go to school. Do you know if all the teachers are going to be tested weekly? Every two weeks? What protocols are the schools putting in place to make sure your children are safe? Are they going to clean the bathrooms every 15 minutes? 20? Clean the classrooms every day? With what? how will they notify you if someone has covid? What is their backup plan? are they social distancing the children? Are they doing different break times? Is there emotional support for a kid if they get it and somehow everyone knows it is them? You would have to set up a protocol for everyone. Then would have to also clean the toilet seat etc after each use. Wash clothes after being outside -
Like at our house my husband never goes out - I do everything with the public, shop ,get gas , get our meds. but I limit it to once a week or once every two weeks. I have hand santizer in my car and in my purse. I dont let anyone bag my groceries. I wash my hands as soon as I come home wash my clothes take a shower. I wear goggles and a mask when I go out. We have boxes set up inside and outside for quarantining our mail and packages. I dont let anyone come to visit. Here is an article about the blood clotting https://www.medicalnewstoday.com/articles/covid-19-possible-mechanism-for-blood-clotting-identified Here is a Study from Stanford regarding the immune system and COVD http://med.stanford.edu/news/all-news/2020/08/immune-system-deviations-found-in-severe-covid-19-cases.html
So I was just checking on your data and I know you guys have just come up with a new salvia test hopefully its more accurate then our current one which is 48% incorrect/ but looking at your current data it does say this " [
Daily new confirmed COVID-19 cases
The number of confirmed cases is lower than the number of actual cases; the main reason for that is limited testing. here is the link https://ourworldindata.org/coronavirus/country/israel?country=~ISR so its kinda a false sense of security since both of countries have limited testing so we really dont know who has it and who is spreading it. Here many of the young people still believe that they cant get it and seem to have not watched the news since it first came out - they are not wearing the masks and are breaking the laws by having parties at parks that are closed…then getting sick and then saying oh this is horrible. One family in Southern Californa 3 died and almost 20 got covid - https://abc7.com/coronavirus-spread-several-members-of-family-die-from-socal/6323756/ - I know our friends on the East Coast in NYC have lost many friends to COVD with various symptoms and the cant even be in the hospital with them or have a funeral. We are here for you- Hugs Angela
Hi Angela.
Thank you for taking the time to write such an extensive response.
I’m going to go into the school tomorrow to have a conversation with the principal
Hey Gails Mom and Angela, I haven’t read Angela’s response but I’m on a tight time frame tonight.
First - background - 42 year survivor of an AVM - started in neck and shoulder, ran out of things to screw up there, moved up to my brain. On disability for a longer list of issues than I want to discuss.
When Covid came out, first I asked my personal medical team (wife 34 years as an RN), daughter (6 years as a Peds ICU nurse, now just over 2 years as a Pediatric Doctor of Nursing Practice) and, daughter, 7 years in the pharmacy, starts her new job tomorrow as a Pediatric Cardiac Sonagrapher), “Okay is this worse for me?” We don’t know, but it’s not better.
Contacted my primary care physician - he said he can see nothing about Covid that would make it worse for someone with an AVM - either in terms of it more likely to catch it or it to be worse.
Talked to my pulmonologist, because essentially I’m operating on 1 1/2 lungs due to vocal cord/esophagial issues and damage to the phrenic nerve which controls my diaphragm. He said, and he made this very clear distinction, I am at no greater risk of catching Covid, but if I get it, I am at a greater risk of getting a bad case because of my compromised pulmonary system.
I talked my neuro doc and he said check with pulmonology because that’s where the risk is.
That was all in late March and early April. We live in the cold north (michigan) and my inlaws have a trailer in Florida that they were at. So, my daughter with the heart condition and I moved over to their condo and had no face to face contact with anyone for a month. The concern at that point is whether my wife or daughters (or non-compliant 19 year old son) would bring it home. The doctor’s worse case scenario is my wife brings it home but is asymptomatic, coughs on me in her sleep while thinking she’s healthy and I catch it and get a life threatening case. It’s a good thing at 35 years of marriage we’re strong enough to not sleep in the same bed for a while.
Every month or so, I touch base with them (hospital has a great secure e-mail) and apparently there is some additional “rumblings” that there might be other things - nerve system and, dang, I can’t remember the other one - where they are seeing some signs to watch for.
I’m sorry, I probably rained on your parade. My parade has been rained on pretty consistently since March - but at 55, I am supposed to take it better.
Keep in touch,
TJ
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Hi. I’m going to find a couple of links for you.
The first I have is a link to the Association of British Neurologists advice, dating from 26 March as to the risk groups for coronavirus. It doesn’t seem to have been updated since. In that article, there is reference to increased risk of poor outcomes for people with cerebral palsy, so I think that depending on whether an AVM has a significant impact on brain function, similar to cerebral palsy or some other neurological conditions, it may indicate a need to be especially vigilant.
The other resource list has been compiled by a moderator on one of the other Ben’s Friends patient communities. I’ll link that one separately.
As TJ indicates, I don’t think that having a brain AVM increases the risk of catching coronavirus; it may affect the severity of the disease, if contracted.
I also agree with Angela that the thing to do is to satisfy yourself about the protections being put in place at school. It is absolutely about risk likelihood reduction, though. There is nothing that I know of that is current focussed on the reduction of the impact of an infection. Make sense?
Best wishes,
Richard
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The other resource I pointed to is…